One year ago today I had my peritoneal catheter inserted in preparation of peritoneal dialysis. That part was uneventful. They wanted to start training me the next week, but the dialysate fluid leaked from around the catheter because the site was not healed yet. So, training began 2 weeks later. I went to the center 4 days a week for 2 weeks and then off to California Grand Bethel in Visalia. Everything went fine. I was fully competent and I thought all would be well because in 30 years of nursing, I had never caused a patient to have an infection. Little did I know. My life was about to change drastically!

I got home from Visalia, and 2 days later DH and I left for his high school reunion in Dove Creek, Colorado. We stayed in 3 different hotels, one of which was not the cleanest. On the way home coming through Nevada, I was freezing (this was Nevada desert in July) and could not get warm. Knew I had a fever. Took my temperature and it was 104.5 degrees F. My abdomen was excruciatingly painful and I knew I had peritonitis! How embarrassing as well as painful and life-threatening. I called the dialysis nurse and was told to stop at the clinic in Reno to have a gram stain and probably antibiotics. She asked if I had a problem with gentamycin and I voiced my concerns about the auditory side effects–hearing and other functions of the ears are adversely affected by aminoglycosides. She assured me that the danger was minimal with peritoneal lavage gentamycin. So I started on a 3 week daily 2 grams gentamycin lavage for 4 hours per day. Plus a total of 3 doses of vancomycin.

I was so sick, I thought I was dying. Then I was dizzy and had no balance. It was similar to symptoms when I was severely anemic. So off to my doctor, i go. Had blood work done. No anemia. Then I thought it was a little like stroke so off to the emergency room–no stroke or heart attack. I thought I was losing my mind. Oh, plus I was having a hard time hearing.

Trusty internet  to the rescue. I used one of those layman sites where you list all your symptoms and it suggests diagnoses. I tried a couple of those sites. I went through the list of symptoms checking each one that was new since I had become sick. Every one of them said “vestibular toxicity.” For those who don’t know, in our ears are canals with fluid and vestibules or larger spaces for the fluid to move. Lining the canals are tiny, minute hairs that send messages to the brain and help us keep our balance. When there is damage to those hairs, there is dizziness. And those hairs DO NOT re-generate. I thought I knew what my problem was. I then researched the effects of lavage aminoglycosides. I found several reputable research documentation that in about 1-5% of the time, lavage gentatmycin causes vestibular toxicity. That is not frequent enough for them to explore alternative treatment, but is devastating to the the 1-5% of the patients affected.

I got a referral to an audiologist and ear, nose, and throat doctor. It was verified that I had lost about 30% of my hearing, and I had -0, yes zero, vestibular function. That meant rather than having 3 sources of balance: sight, muscle sense, and vestibular function, I was down to 2. That also results in the fact that with inadequate lighting, I have no balance. I had to use a wheelchair when out of the house for several weeks. It meant that I could not take long walks to build my stamina to qualify me for a kidney transplant because I tend to fall on unfamiliar and uneven terrain.

The most upsetting part of the whole story is that my dialysis team still does not take the potential for harmful side effects from this medicine seriously. I recently had a scare due to a dialysis machine malfunction. And their treatment was more gentamycin. I agreed to one-half dose one time. I told them they needed to have an alternative protocol. They appear no to believe that my new disability is due to the medication. When I brought copies of the studies done, they brushed aside because I found them on the internet. These are studies done by prestigious medical facilities by nephrology board certified physicians. Ignorance hurts.

You have to educate yourself to be your own advocate. Those you think should know and advocate for you, often do not want to give up their old thinking. If you are too sick to advocate for yourself, you may end up like me.

I can now function pretty well and a day to day basis, but I do not do well in new places. I do not drive, yet; I hope do to so again in the near future. There was a time I could not function in the kitchen, but now I’m fine. I still work with Job’s Daughters and attend every function of our Bethel. I spent the last weekend canning with no assistance. I homeschool my granddaughter. I have a full life, but every night I have to hook up to the dialysis machine and will for the rest of my life because I am no longer a candidate for a transplant.

If peritoneal dialysis ever stops working for me and I am told I have to do hemodialysis, I will refuse. Those people exist–they do not live.

 

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